Staying Well and Doing Well: 5 Tips for College Students with IC – IC Awareness Month

by Maggie Damken

Being a college student is hard, and it’s even harder when you’re also an IC patient. IC, short for Interstitial Cystitis, is a chronic pain condition that affects the bladder and pelvis, and for many of us, the pain can be devastating. I developed IC as a freshman in high school, and by the time I was diagnosed late in my junior year, my health was too precarious to leave home. I spent my first two years at community college and lived at home, where I could easily adhere to the IC diet, visit my urologist, and focus on healing.

In the summer before I transferred to my four year school, I spent a lot of time worrying:

“What will I do if I can’t eat the food at the dining hall?”

“What if I have a flare up? Can health services help me?”

“Will my professors be understanding?”

“What if I’m stuck in a hall with a group bathroom?”

“What will my roommate(s) think?”

Going away to college is stressful enough without these added worries. To make going away easier, I’m here to not only share some of my experiences, but also tell you what you can do to take charge of your health and maintain a level of wellness while still getting the most out of your college experience.

1. Contact Your College/University’s Office of Disability Services

When I went away to college, I was of course nervous to be living away from home—but I was even more nervous about where I’d be living on campus. How close would my dorm room be to the bathroom? How many times would I wake up my potential roommate by going to the bathroom ten or more times a night during a flareup? I was stressed out, embarrassed, scared, and I hadn’t even moved in yet—I knew I had to do something to ensure I lived in an environment that met my needs.

Luckily, the Office of Disability Services is there to do just that: make sure you’re in an environment that meets your needs.

You may find it under a different name—Office of Disability Services, Office of Student Academic Services, and Office of Accessibility Services being just a few variations—but every university has one. Their purpose is specifically to provide accommodations to students who need them. Accommodations are wide and varied depending on the disability, and can include mobility support, medical transportation, and specialized housing, among other things. You’ll have to register with the office and provide documentation for your disability. For me, this meant filling out forms describing IC, how IC impacts me, and my desired accommodations. My urologist also had to provide documentation of how long I’d been his patient, my symptoms, and his recommended accommodations. The documentation you fill out at your college/university may be similar or different. If you aren’t sure what accommodations your school offers, you can probably find a page on your college/university’s website that details the services they provide. You could also e-mail or call the office to see what they can do to help you.

Because I went through my college’s Office of Disability Services, I was able to get a single with an attached bathroom, which I shared with the person who lived next to me. I didn’t have to explain IC to a roommate, or worry about waking my roommate up during the night and being seen as inconsiderate. Just having that privacy gave me a great deal of comfort, and removed a lot of worry and stress from my academic year.

2. Health and Wellness Services

Health services is there to help you when you aren’t feeling well. Of course, for IC patients, our definition of “not feeling well” differs from non-IC patients. Luckily, the medical staff in health services usually consists of nurse practitioners, an on-call doctor, and some psychologists. (Each college/university is different, though, so be sure to check what is available at your school! There should be a page on the school’s website for health services, but if you want to know more about what services they offers and how they can help, you can always e-mail or call them.)

The good thing about having real medical professionals work there is that they can write prescriptions for you. In the event health services can’t help you, you can also call your doctor and have them call in a prescription to a local pharmacy. You can also find local hospitals, doctor’s offices, and clinics in your college/university’s area, if that’s something you need.

There are other wellness services beyond just the health center. If there’s a sport or physical activity that relieves your IC symptoms and your stress, your school may offer it, either for credit, for fun, or as an extracurricular. Most schools have open pool hours so you can swim without being in a swim class or on the swim team, and yoga, pilates, dance, meditation, and other IC-friendly exercises may also be available.

3. Consider Food Options

As IC patients, our bodies are very sensitive to what we eat—what triggers pain in one IC patient may be a safe food for another. It’s a difficult process to figure out what foods are safe, if they’re always safe or if they’re only safe in certain combinations, or if a food needs to be completely avoided. I was scared about whether I’d be able to stick to the IC diet while at school, or whether the food would cause flareups. Food was one of my biggest stressors when it came to college, but I’ve learned that there are a variety of ways to maintain your health and keep triggering foods to a minimum.

Campuses usually have more than one place where you can eat. There’s the major dining hall, but there may also be smaller places where you can order sandwiches or buy wraps. The major dining hall usually has a wide variety of food, including a salad bar, international food, pizza, and a grill, among other things—but the food choices change every day. If you can’t find something to eat, you have the option of directly asking a food service worker to prepare something for you. I have done this before, and so have some of my friends who have severe food allergies. There may be a dean or administrator who oversees campus dining, so if all else fails, you can contact that person. You need to eat, and your food needs should be taken seriously.

Additionally, if your budget allows, look in to local restaurants. There may be places you can go out to eat and places you can order from. There are also bound to be supermarkets in your college/university’s surrounding town.

Some dorms have kitchens. If you’d feel more comfortable cooking your own meals, and you have the budget to buy food from the local supermarket, you can request this accommodation through the Office of Disability Services.

4. Learn to Self-Advocate

Unlike high school, you don’t have to ask permission to go to the bathroom in college, but you may encounter a professor who doesn’t like students to use the bathroom during their class. During my sophomore year of college, I had a professor who told us, on the first day, that he found it distracting when students came in and out of the classroom, and asked us to stay seated for his lecture. For many students, sitting through 75 minutes without taking a bathroom break might have been a breeze—but I always started to squirm a half hour in.

I should note that this professor did ask us to tell him if we had special circumstances, but I was too embarrassed. After bad experiences with doctors, friends, and family members who didn’t believe me or who thought I was exaggerating, I was ashamed to admit to my professor that I might need an exemption from his rule.

Don’t sit and suffer. Your professors need to accommodate you, not the other way around. Although it can be scary to ask for accommodations, it’s something you need to do. If you do encounter a professor who has strict bathroom policies, all you have to say is: “I have a bladder problem, I need to be able to use the restroom freely.” You can tell them as much or as little as you want. If, after having a private conversation with a professor about your needs, they still aren’t understanding, you can go to the Office of Disability Serves and get an administrator involved.

Part of this is learning to advocate for yourself, and that doesn’t come easy when IC is an illness that so few people know about or understand. The sooner you learn to stick up for yourself, the better off you’ll be. Your needs are important, and they need to be met if you want to stay well and succeed in school.

Sometimes, you’ll need to self-advocate to your peers. Let’s face it: alcohol is a part of campus life and parties, and you may feel pressured to drink to join in on the fun. But if you know, or are afraid, that alcohol may trigger a flareup, don’t do it. I personally do not drink because I don’t want the painful flareup that will follow, and when I’m offered alcohol, all I have to say is: “I can’t drink for health reasons.” This always works for me. If someone tries to pressure you beyond that, you can always add that you’ll have an adverse reaction or that it won’t mix well with your medication. Making friends and being social is important, but don’t compromise your health just so people like you. People will like you whether or not you drink, so if drinking isn’t good for your IC, don’t torture yourself.

5. Learn Stress Management

College is stressful. There’s no way around it. Whenever I’m overwhelmed by academic work or extracurriculars, I have a flareup—and then I get even more overwhelmed because I can’t work efficiently while I’m in pain. Like learning to self-advocate, the sooner you learn to manage your stress, the better off you’ll be. My college offers stress management classes for credit, and yours may offer something similar.

It’s okay to ask professors for extensions on papers and projects. Whether you need an extension because you have a mountain of work due at the same time, or because you aren’t feeling well, you can always ask and see if they’ll allow you some more time to complete your assignments.

While it’s important to take classes that contribute to your major, it’s also important to take classes for fun or to learn something new. If it’s a class you enjoy and that you find interesting, you’ll look forward to it and the work won’t seem so bad.

Remember, time spent taking care of yourself is never wasted, so make sure you have an activity that you find relaxing. This could be a physical activity like yoga, or it could be something like writing, drawing, or listening to music. Learn to schedule your classes so you have one or two free days during the week to rest, catch up on work, and do something fun.

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Leaving home for the first time is hard, and it’s okay to wonder how this big change in your life will impact your health. The good news is that you aren’t alone. There are people on campus to help you. There are ways to take care of yourself. And hopefully this list gave you an idea on how you can do that.

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My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders.
As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life.
An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions.
With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.

Interstitial Cystitis Network

The ICN is a health education company dedicated to IC and chronic pelvic pain syndrome. Rated the top patient website dedicated to IC in peer reviewed studies by Harvard (2011) and the Univ. of London (2013), our goal is to empower, educate and encourage patients and providers!